Co-designing support strategies for parents of children with newly diagnosed sickle cell disorder

Health

Co-designing support strategies for parents of children with newly diagnosed sickle cell disorder

Sickle cell disease affects over 1 in 2,000 live births, making it the most common inherited (genetic) condition in the United Kingdom. Early intervention following diagnosis is vital to decrease the frequency of painful crises, minimise the need for hospitalisation, and enhance overall quality of life. However, it can be difficult to engage parents in the early stages following their child’s diagnosis due to fear, secrecy and social stigmatisation.

The main purpose of this work was to co-design a support strategy for caregivers during their child’s first year of life following a sickle cell diagnosis to encourage early engagement with health services.

The study used the principles of Experience-based Co-Design (EBCD) supported by the visual storytelling company, Nifty Fox Creative, to co-facilitate the development of a co-designed animation. Parents and health professionals worked together to finalise the content, aesthetics and functional characteristics of the animation. Four parents volunteered to voiceover the animation.

The resulting co-designed animation provides an accessible tool to support families shortly after diagnosis and offers a scalable model for collaborative resource development for parents at other stages of their child’s sickle cell journey.

Sickle Cell support for caregivers following their child’s diagnosis - the animation

Aims

The primary objective of this work was to co-design a strategy to ensure greater accessibility of support for parents during their child’s first year of life following a sickle cell disorder diagnosis to encourage early engagement with health services.

Summary of Findings

The co-designed animation, funded by a British Academy (IF2324\240114) Innovation Fellowship awarded to Dr Jane Chudleigh and supported by Nifty Fox Creative, was developed in collaboration with healthcare professionals and caregivers of children with sickle cell disease. It offers a clear, practical timeline to guide families through the first year after diagnosis, a period which can often be overwhelming for families.

The animation is based on the real-life experiences of caregivers of children with sickle cell disease and aims to empower families with the knowledge, confidence and support strategies they need to navigate their child’s early care journey.